Baby cadon

[cadon's mum]

Been to see urologist today, ultrasound was clear. doc say's cadon will need op at around 4 as he has no muscle holding in his urine (hence the constant leak) still need to catheterise once a day to protect kidneys from possible infection. doc says constant leak is good at the moment as minimal risk of infection not so good when he's older, (will worry about that when we get there) next app is with orthopedic surgeon to find out what's happening with his legs and then shunt review in 2 weeks.(feel we need to hire cadon a P.A to co-ordinate his apps as we have had 12 inside a month at three seperate hospitals. we are now starting to relax a little have stopped checking his eyes for sunsetting every 5 minutes and we are sleeping a little better at one point we were waking every hour to make sure shunt was still working NEUROTIC STAGE OVER FOR NOW!!

[valmarie]

have they taught you how to feel the fontanelle, aka soft spot, on his head to check the shunt? it normally is soft and dents in a bit...if the shunt malfunctions and there is overload of fluid that spot will become full. its a quick easy check.

also what op did they mention? my son so far hasnt had to be catheterized even though his level lesion suggests he should not have bladder control. def at times when he cries a urine shot or stream will come out....but not always so who knows. we r on the 6 month check up route for now.

[cadon's mum]

Yes iv'e learnt how to check the fontanelle, i'm just so worried something is going to go wrong and i won't know. cadon's urologist said that he would probably need an op at four but did'nt say exactly what it would involve, he said that he would need urodynamics to find out exactly what is happening first. we are on the 6 month route too. cadon is voiding on his own and when he cries urine shoots out like your son, i have been told to catheterise him daily just to protect him from possible infection but when i do ,only a few drops comes out in his nappy.

[valmarie]

Interesting. Well praying that our kiddos continue to void on their own! I'm not against believing for miracles! :)

And re: the worry. When we were home for maybe a week after his first post op check up after the shunt...I started noticing something looked different. And I felt sick about it. I gave it a day to observe and just felt like the shunt was bigger than it had been. So I called the doc and she told me some other things to look for. I hung up and still had that nagging feeling in the pit of my stomach so I called back. Our docs are 4 hours away so it's not an easy thing to just pop in there for a quick check....but we packed up and went. He ended up needing a shunt revision because fluid was draining AROUND the shunt due to a small leak. So...moral of the story...I truly believe that as moms we can get in touch with that inner part and will just sort of "know" when things are wrong. I hope that helps some. It's just so hard to enjoy life when walking in worry! Trust me, I know. Cant' say I never do but I'm starting to trust my instincts.